Becoming more aware of Symptoms following Diagnosis

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I was recently diagnosed with Aspergers. As I mentioned in another post, I first learned about Aspergers in mid-December 2012 and then spent the past 4 months reading everything I could about the “condition”.

So, during the past several months, I noticed the following:
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#1 – My stims have changed (or maybe I am just more cognizant of the fact that I regularly stim?)

Over my life (I am now 50 years old), I have had a bunch of different stims. I have a list of > 30 different stims I remember doing over the course of my life. Everything from chewing on pen caps to rolling tape into balls to chewing on the inside of my gums/cheek to pacing whenever I talk on the telephone. I even used to constantly twirl my wedding ring. Until I lost it

Before I learned about Aspergers, I didn’t really think about these as stims. It was just what I did. Usually without thinking about it.

Anyhow…after learning of Aspergers and reading a bunch of books on Aspergers, I noticed some of my stims have become more pronounced.

First, I started singing to myself more often. Mainly, its one nonsensical song with a soothing rhythm (for me). I find myself singing this song whenever I am walking my dog. I often make up new words to the song. Sometimes, I find myself singing and cannot remember having started.

Second, I started flapping more. I flapped previously, but very infrequently. Now, I find myself enjoying the flapping. Like, it feels good. Almost too good. I am wondering if reading about flapping triggered this.
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#2 – I have become more aware that when I talk to people, I look at their mouth.

I have few recollections of where I looked when I spoke with others before I learned about Aspergers.

For example, I do remember where I looked, during one specific interview (about a year ago). For interviews, the “experts” stress the importance of looking people in the eye. So, for this one interview, I specifically remember doing my best to consciously (though painfully) do this when the hiring manager spoke. However, I had a very difficult time maintaining eye contact particularly whenever I was speaking or I was thinking.

Anyhow…now, all I think about is the fact that I am not looking into people’s eyes (where before I never paid attention to this). And, all I notice are people’s mouths. When watching TV, all I see is a big mouth. It is quite disturbing.

Note: This reminds me of something that happened several years ago. I purchased a new pair of shoes. And, for the next 2 months, all I did is look at everyone’s shoes. Argh…
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Anyhow, my question is…has anyone else experienced a similar phenomenon?

Yup. Don't worry about it--you've received validation for being different, so you're working out how that affects how you see yourself. Most of us relax a little after diagnosis because it's been demystified for us, and it's no longer so scary. Instead of wondering, "What's wrong with me?!" you kind of go, "Oh, yeah, that's just an autistic trait." In time you figure out which things you want to change and which are useful, enjoyable, or just neutral. It's quite normal to experiment with not hiding your differences; it doesn't mean you're "becoming more autistic", just that you are more aware of it and less ashamed of it.

As you find out more about aspergers and the symptoms, strangely enough you recognise more of them in your own behaviour.

What used to be just your own "weird" behaviours are now aspergers symptoms and hence more noticeable. You can also look for and recognise aspergers behavioural traits which you had not noticed before.

Its actually quite funny, amusing and liberating.

Cheers

kabouter Thanks for the reply.

Without a doubt, one of the strangest moments in my life occurred while reading Tony Attwood’s, “The Complete Guide to Asperger's Syndrome”. It took me forever to read, as I was busy highlighting paragraph after paragraph of things that described my behaviors and/or experiences.

I went through this before and after diagnosis. I still encounter a bit here and there. As stated above it's a fairly typical process.

Yeah,
well I was researching aspergers because of a granddaughter, when I realised that the descriptions also fitted me.
The more I read the more it made sense. And then when I told my partner I thought I had aspergers, she said, yes, I've thought that for years, and that one of her friends had said that they thought I had aspergers as well.

No one told me of course.

The first person I told, when I did an online test in my fifties and got a high score, said: "I thought you might be."

Had never occurred to me until then. (I now have a formal diagnosis, so they were right.)

The thing with stimming is that it usually occurs in people with severe autism as a way of staying grounded. It's because unlike most of us, they aren't able to grasp the concept of what room they are in, where the room is located in the house/building they are in, where on the street that house/building is and where in the town/city that street is located. So they employ self stimulation as a coping mechanism to make up for this lack of space location awareness impairment.

Autistic stimming isn't the same thing as nervous tics and habits. If it was, I can think of a few NT's I know of who "stim" more and worse than I do.
I'd suggest everyone do some research into why people with autism stim. And not to feel compelled to fixate on particular repetitive nervous habits you have and embellish or augment them because you feel that you must stim because maybe you think all people under the autism umbrella stim, because not all do.

[youtube]http://www.youtube.com/watch?v=vUG7wlZmrfs[/youtube]

Looking at someone's mouth while they are talking is common amongst people with Asperger's. It's perhaps to some degree done as lipreading.
But I think it's mainly because the mouth is moving and people with autism tend to fixate on movement.

Yesterday I read a blog post that described shutdowns in terms that were utterly alien to me. That is, an NT parent described adult autistic shutdowns as being focused on emotional upset. When I have a shutdown, I cannot detect any emotion at the center of it, and often I don't feel any emotions at all for the duration.

So when I see someone making a claim that "This is what autistic stimming is" like in that video you linked, I question whether this person really knows what she's talking about, or if she has accurate information that applies only to some autistic people that has been generalized somehow.



I don't have to do research on why autistic people stim, because as an autistic person who stims, I can answer that question for myself. I'm not doing it wrong or not really stimming if what I get out of it is not identical to what another autistic person might get out of it. It's not as if I started making myself do it to seem more autistic - it's stuff I've done all my life to various degrees. I've always rocked, toe-walked, flapped, flicked my fingers in various ways, engaged in visual stims, etc. I don't do all the stims I did as a child, but I still do some. In my diagnostic report, stims are mentioned that I wasn't even aware I was doing while I was there.

Anyway, I do have some things I do to locate my body in space. I don't have any trouble with the idea that I am in a room or where that room is on any level from local to global. However, I do have trouble with knowing where my body actually is, which makes things fairly nervewracking when I am in even slightly crowded places.

I also recall reading descriptions of stimming by two severely autistic people (Tito Mukhopadhyay and Carly Fleischmann) and as I recall, Carly's explanations don't really match up to what the woman in the video you linked says. Tito's descriptions do seem to match up, at least to the extent that Tito describes an inability to sense where his body is without stimming, but I don't see anything that relates that to not knowing whether he's in a room or not, etc.

Edited to change the bit about Tito, as I remembered reading something else about him that I can't find again.

This description was interesting to me, and it avoids making definitive statements about autistic people as a group:

http://everything2.com/title/stim

What I have read from professionals indicates that adults who might be described as "high functioning autistics" tend to stim in private if they do at all, which makes such things less likely to be observed. However, no one ever sent me the memo.

I´m 59, female, and have been through the same things, and in the exact same period. I am still at the "What the devil is wrong with me?"- stage (been there for five decades), - and sadly I cannot have a proffessional validation in my country
I know, from a psychiatrist and a psychologist, that I have some traits. and I recognize them myself: hypersensitivity to sound, being socially naive, understanding a bit literary, often having to have jokes explained, a tendeny to look away when thinking, needing much time alone and so on. These, I have always had.
Later, I think, I have developed a slight tendency to rock (not that I noticed before), to pace when worked up, to flap when not being able to escape from something physically painful. That is fairly many, and there are more, - but I have come to the conclusion, that most of it is probably signs of belonging to the phenotype, or simply nervous habits. (My scores are in the border area, slightly on the "AS"- side).

When we are examining ourselves for AS, we tend to "try the shirt on for size" for a time and we take many quirks and nervous activities for AS-behavior. I did.
I think, the best way to know is to remember, or ask about your behavior as a small child. Did you have any of the typical behaviors? View them isolated. Anything else might very well be nervous habits, you have collected over time.
I myself am going to post a thorough description and my scores to an american expert and have his/her opinion to close my investigation.

Nevertheless, reading these pages has been a good AHA, and there is lots of good advice to be had here

Last edited by Jensen on 28 Apr 2013, 1:39 pm, edited 1 time in total.

I can really relate to this. The psychologist who diagnosed me said that one of the benefits of getting a diagnosis is that in a way it gives you “permission to be autistic”. I have really found this and I no longer suppress all of my “autistic traits”, which I used to do because of wanting to “fit in” or whatever. For example, if I get overwhelmed by the noise when shopping, I no longer suppress the urge to stop and cover my ears. I just do it because I understand now that there is a reason for it and that I’m not abnormal. Also, I did start to notice some behaviours more, like how I look at people’s mouths rather than their eyes. It felt like I was doing it more but I think it was just that I was more aware of it.

I don't have a diagnosis but I can still relate to having a better understanding and self-observation of autistic traits in myself once I'd learned about them.

For example, I Initially thought "there's no way that I'm avoiding eye contact with anyone! No, that doesn't describe me, I'm a perfectly friendly person". Then I became aware that actually, I do tend to look away quite frequently when I'm formulating a response in a conversation. And I realised that when I'm at the supermarket, I look at the shelves, the products, the floor, the trolley, the signage, anything but a person, and when I get to the queue at the checkout, I don't engage anyone, I study the offer leaflets at the till, and I say the absolute minimum to get me through. Then when I get asked if I have a loyalty card, I just say "I left it at home" because I don't want to fend off the sales pitch or to actually have a two-way conversation.

All very weird, I guess my body language has been screaming "please don't speak to me or engage me" for years and I didn't realise it.

I have been feeling the same way these past few months, and to be honest I find it quite frustrating and even distressing. I've become so hyper-aware of everything I do now that I feel like I can't know for certain if I'm "really" doing something or if I'm subconsciously manipulating myself into doing it in order to fulfill a newly perceived role. It's causing me to have an identity crisis.

For example, I know that I used to walk on the balls of my feet sometimes, but did I always do it this often? I know that I preferred to look elsewhere when talking to people, but was it really because looking them in the eye made me feel anxious? And when I did look at a person face, did I fixate more on their eyes or their mouths? I don't remember! Does it really matter?

On the one hand I'm glad that I'm now more informed about ASD, but on the other hand I feel like this knowledge is now driving me crazy and making me doubt everything I do. Does this feeling ever wear off? If so, how long does it take? It's been months already.

I don't have a formal diagnosis but I think it would help.

I also noticed my behaviours and ways of thinking as being Aspie more now because I'm looking at the present and the past with a different perrspective.
Things that I might have viewed as "wierdness" before I see as part of Aspie traits. On their own I let them pass, but collectively, cumulatively they add up.
For example watching people's mouths not their eyes, looking everywhere else when thinking. Heightened sound sensetivity, walking on my toes as a child, twiddling objects in my fingers, keeping to a routine, obsessions.
I realise some things I have trouble with many people have trouble with, but I find more tiring because it takes greater effort to overcome them.

The times a former workmate reccomended books to me or asked me questions about my thought processes that make me realise now she saw Aspie traits in me and was trying to get me to see that too. (She had a brother who was Autistic).

Verdandi Thanks for your reply.

I mostly stim when I am thinking or trying to concentrate. Or when I am bored/restless. Or when I am excited. As it soothes me.

It drives my NT wife crazy (as she says it’s very distracting – to her and others). Whenever she sees me doing it, she either grabs my hand to stop it and/or asks me to stop it.

I also stim when I am nervous or stressed.

The following link http://insideperspectives.wordpress.com/compulsions/stimming/ includes several theories behind why people stim.

"1. One specific theory states that these behaviors release beta-endorphins in the body (endogeneous opiate-like substances) and provides the person with some form of internal pleasure.

2. Another set of theories states that these behaviors are exhibited to calm a person (i.e., the person's sense is hypersensitive). That is, the environment is too stimulating and the person is in a state of sensory-overload"

I think both apply to me.

To add to the whole "why people stim" conversation.

My handflapping for example.

I can't handflap on command. I can't handflap just because I'm nervous.

Handflapping is a way of communication for me. It's communicating with nobody generally. Nobody is there to see it. But its innately connected to how I'm thinking. It has nothing to do with nervousness or anything like that.

But its a communication stim at its core.

Handflapping to communicate thoughts I can't communicate in words isn't somehow not a stim because I'm verbal.



Rocking. Rocking calms me. Part of how it calms me is by giving me that body awareness of where I am. I have a weak body awareness to start with. When I'm overloading it gets worse because I'm not processing sensory data even more. I already have a quite abnormal sensory system. I have severe sensory issues. Yes I do use stimming to ground myself.


No, stimming for me isn't because I'm bored, or because I'm restless, or because I'm anxious. It's because I can't think. It's because I'm overloading. It's because I'm trying to stay here. It's a protection method from the world around me. It's the world attacking me and me fighting back.

While other types are me saying this is great! I want to share how great everything is! I want to share what I'm thinking. I want to say that is interesting! Life is interesting! Stuff is interesting!

And its me just moving like is natural. Or not blocking myself from doing things to make me feel safe.


I don't stim always. I stim when when I need to. I stim automatically, without thinking about it when I need to.

But just because I'm diagnosed with Asperger's doesn't mean I wouldn't stim.


And before I was diagnosed I had no clue that I did, because I didn't pay attention to any of these movements.